What It's Really Like to Live With Wet AMD
Advanced macular degeneration is "no cup of tea," but it's not the end of everything either. Three patients get real about living with vision loss.by Lambeth Hochwald Health Writer
To find out what it takes to face a diagnosis of advanced age-related macular degeneration (known as wet AMD) with determination and grace, we spoke with three people who are living with the condition. (Wet AMD causes abnormal blood vessels to leak fluid or blood into the macula and can lead to blindness if not treated.) All three were honest and frank about their fears, how they’ve had to adapt, and their feelings about treatment. Introducing:
Joan Hafley, 89, a retired first-grade teacher who lives in Hustonville, KY
William Graham, 80, a retired head of technology who lives in New York City
Ed Pitkoff, 79, an executive-search consultant who lives in Delray Beach, FL
We asked them all the same series of questions. Here's what they had to say.
Q: What was your reaction when you were first diagnosed with wet AMD?
Hafley: "I found out I had it 17 years ago. I was having problems seeing out of my left eye and was told I had some 'oozing back there.' I had no idea what wet AMD was and even said to my doctor, 'Are you sure about this?' Once he gave me my diagnosis, I did some reading about it. A friend of mine had macular degeneration, so it really helped to talk to her.”
Graham: "My father had macular degeneration, but I didn’t really know a lot about it when I was diagnosed in 2006. Because of my dad, I was very careful to watch my eyes, which were worsening gradually. But even doing that, wet AMD still snuck up on me."
Pitkoff: "Four years ago, I had just gotten a new pair of glasses, and when I put them on my left eye was very blurry. I went back to the glasses store and told them that there was something wrong with them. From there, the eye doctor looked at my eyes and sent me to a specialist, who told me that the canals in the macula were filled with what they called bleeding. They said that if I had gotten there earlier, they possibly could have saved my left eye."
Q: What was the scariest part of your diagnosis?
Hafley: "When I was diagnosed, the only thing you could do was to take vitamins to help the good eye. For me, it was terrifying to think I wouldn’t be able to read again as I had always been an avid reader."
Graham: "I dreaded the idea of having this because I knew it would be a life changer. When it was discovered, I worried that maybe it should have been discovered a year before. I had severe vision loss by the time I was diagnosed, and it was very scary."
Pitkoff: "I worried that I wouldn’t be able to keep working. This diagnosis is hard on you mentally and, for me, not working would be very difficult."
Q: How has your diagnosis affected your daily life?
Hafley: "I can’t read a book comfortably, so I enrolled in a talking-books service—I select book titles and they’re sent to me. When I finish one, I mail it back. It works out. I can still watch TV, and I have a large-screen I can see without a problem. I have, however, quit polishing my fingernails.
I still cook, but that can be difficult. The other day I went to make some packaged scalloped potatoes. The writing on the box was in yellow and the light couldn’t pick it up, making it impossible for me to see the directions. With most things, if I put them under the light I can read them, so I keep a light on my counter when I turn my dishwasher or oven on. The biggest change is that I quit driving two years ago, because when cars don’t have their lights on, they tend to blend in with the surroundings."
Graham: "I can’t see anything that has a dial, so I’ve put little tabs on the microwave and the remote control so I can still use them. The worst thing is when my wife asks me to turn the oven off at a certain time. Because I can’t see the digital display on the stove, it’s hard to find the off button.
Eight years ago, I stopped driving and that was a big game-changer. I can still watch TV and I recently got a 75-inch TV. I need binoculars to watch it, and I use a second pair when I want to look at the information on which channel a show is on.
I do go to the theater twice a week. All of my seats are in the third row, where, with binoculars, I can see the people on the stage."
Pitkoff: "I can still drive but the problem is I can’t read the signs on the highway. Looking straight ahead is foggy but when I look to the left or right my peripheral vision is sharp and clear as a bell. The second thing is I have two screens in front of me at work. Now I use two magnifying glasses to read my screens."
Q: What’s the most difficult thing about your treatments?
Hafley: “Maybe it’s because I’ve had them for so many years, but I don’t find the treatments too difficult. They numb your eye, and they have a little instrument that holds the eyelids up to get to the pupils, and they put the injection in. There’s a little bubble that comes up in your eye when the injection goes in. That’s all there is to it. You don’t feel anything."
Graham: "I can be on injections every month for three months and none for five months, but I’m not going to sugar-coat it: Injections are the absolute worst. They don’t hurt but mentally they’re terrible. If you could do a pill instead, it would be better. You look down and to the left, they put the needle in and you can’t move. That whole 20 seconds is like a horror."
Pitkoff: "I have wet AMD in both eyes and having regular injections in your eye is no cup of tea. It’s also true that at best my injections can arrest the problem but will never reverse the problem. The best thing I can wish for is that my eye doesn’t degenerate worse."
Q: What advice would you give to anyone who has just been diagnosed with wet AMD?
Hafley: "Get your eyes examined every year. Once you do that, make sure to do everything the doctors tell you to do. Get injections if you need them, take vitamins if you’re told to. Don’t try to doctor yourself—because if something happens to your eyes it’s a terrible feeling."
Graham: "If you think something is going wrong with your eyes, immediately go back to your doctor. The only option when you have wet AMD is to have treatment. But I also urge people to make sure you don’t let it change your life. I volunteer, I take classes, and I travel. This isn’t cancer, it’s not a killer. I want you to enjoy your life and do the most you can."
Pitkoff: "Get regular checkups on your eyes and don’t let it get past the point of no return. I used to work as a graphic designer. I would work on a drawing board, and the reflection from fluorescent lamps onto the bright white pads ruined my eyes many years ago. I wish I had gotten the help I needed much sooner."